Ashley's Story

She will leave fingerprints all over your heart

9/10/2012

Another One

Its never happened to her before.  In all 7 of her years.  Today we were notified of yet another gram negative bacteria in her blood.  That makes a total of three bugs we are currently battling.  Two gram negative and one gram positive.  Really hard for me to comprehend, but its true.  It looks as though two of them came from inside her own body and found their way up to her central venous catheter.  The other is the  colonized staph that reside inside of the catheter and chooses to flair up every once in a while.  I don't know that I ever fully expect to kill it.  The best we can do is treat her when it shows up.

Ash is feeling so much better than she did last week.  She was down for a few days.  Really tired and weak. Not a lot of her smiley self could be found.  This week she seems to be fine.  Completely normal.  So happy and content with life.  Lots of laughter and giggling going on.  I find it hard to believe she has such life threatening bacteria inside of her.

Two of them we have never seen in her until now.  I know better than to read about them, but I also know better than to remain ignorant of exactly what is going on inside of her little body.  I hate to know how dangerous it all is and yet I hate to not know what we are up against.  The reading tonight proved to do nothing but frighten me so I stopped.  No more tonight.  Its enough for me that her presentation is amazing and that she feels better.

I have no idea how long we will be battling this infection.  The last one took 9 weeks of treatment.  I'm so tired after just a few days I can't imagine how I'll be feeling if this is another long course of round the clock IV meds.  I know we will survive it, but tonight I'm just too tired to figure out how.  I've got two more hours until the next med runs and then I'll wait up until it finishes at 3am.  Then I'll have a chance to sleep for 3 hours until its time to get up for the day.  I'm headed to bed for the next couple of hours.  Alarm set for 2am. Goodnight.

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